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Newly diagnosed and struggling!!!!

Hi! My name is Angela. I am 34 years old and I was diagnosed with Lupus and RA in February 2006 after battling off and on with it for 5 years. I have two children 9 and 6 and my husband has a job that keeps him from helping much (and he travels at times). I also live 750 miles from any family, again because of my husbands job, so I have no help or support. I am glad I found this web site because the closest support group is 2 hours away, and I really need someone to talk to. Just like several of you, I was relieved at first that my symptoms had a name and I could finally tell my husband that I wasn't crazy. But now, I am really depressed. This flare won't go away. I am on Plaquenil, Medrol, Cymbalta and Ambien, but it is not working. Don't get me wrong, I am very thankful that I don't have organ involvement at this time, but the fatigue and pain can get you down. My delimma is regarding my job and my health. I am currently working an 8-5 job and I can't do it much longer. I was also told by my supervisor that if I miss another day, that I would be terminated. My husband says to just "suck it up", but he does not really know how I feel. It takes everything I have to get through the day that I am useless to my children when I get home. I hurt everyday, the Raynaud's stays around most of the time now, my memory is horrible and the fatigue is overwhelming. It is a little better than it was in February, but not enough to function from day to day in the capacity that I am used to. Do I need to reduce my hours to help my medicine work, or am I expecting too much? I am so confused, angry and depressed.
If anyone has any ideas please tell me. All I know is that I am too young to feel this old!!!!!!!!!

hi! i know exactly how you feel! i'm on the west coast, while all of my family lives on the east coast. i'm trying to figure out how to work full-time and take care of the house, and my daughter, and myself.....i don't have an answer, but i wanted you to know that you are not alone. it's so hard b/c we sometimes we don't "look" sick, but feel so awful. others don't get it. listen to your body! rest when you can, and as much as you can. maybe you can get some written info on lupus for your husband to read; it might help him understand. is it possible for you to work part-time, or 1/2 days? i keep telling myself that tomorrow has to be a better day.....i hope you feel better soon!

Ditto

First, I want to say how sorry I am that you don't get the support you need from your husband. I cannot imagine going through all of this and being told to "suck it up". I don't mean to disparage your husband at all, but hearing that really breaks my heart for you. Secondly, I am also having issues at work resulting from days missed. Depending on how large a company you work for, the HR manager should be able to answer any questions you have about termination policies. It would be a good idea to apply for family medical leave. You get 12 weeks a year that can be taken as needed. Any time missed will not be counted against your attendance record. It is a little protection that is invaluable to people like us. I don't have all of the details for you, but HR should. Also, I know I have recently seen a post from someone that works in HR...maybe you could look for it and ask them for help...look in Laurie's Lounge. Hope this helps a little. I will keep you in my thoughts and prayers.

I am so sorry you are having a rough time right now. Especially from your dh. Mine used to say the same thing until I went off on him. Not a course I'd recommend but it worked, that and counseling. Your dh sounds like mine, it could be that if he doesn't have to truly face the facts that it will all go away if you "suck it up". Have you given him info to read? I really think he's in denial about it. Another thing my dh mentioned to me when we finally sat down and talked it all out, he was acting the way he was because HE was scared, because HE couldn't fix what was wrong. Men, usually, are brought up to protect those they love and they can't do that with lupus. They can't beat it up or wipe it away and the only way they know to deal with something like that is to pretend it isn't there. If he can get you to suck it up and pretend with him then his world is normal. But he needs to face facts. He can't protect you from this, he can't make it go away but he CAN make you feel better. He can support you, take care of the kids, not start questioning your bad days. He can sit next to you if you are hurting and can't be touched that day. If it doesn't hurt to touch, he can massage your feet or rub your head. Run your bath so you can try to soak the pain away. Make your dinner AND clean the kitchen afterward. Sounds like you really need to talk and spell it out for him. Cause if you keep sucking it up you will end up flat on your back and no good for anyone.
Another thing I want to mention. You can't do it all. If the house isn't spotless then it'll be all right. If you have sandwiches tonight for dinner well that's ok too. If you are having a good day then cook that dinner you want. But don't try to do it all, you really won't be helping anyone in the long run. Have you seen the site Hatlady recommends to all newcomers? With the spoon theory on it? It's great for explaining how one minute you can be fine but the next, because you did that one more thing, it puts you over the edge.
I only have one son, but I HIGHLY recommend board games and cards. I have so many of them I've lost count. THAT is something you can do with the kids on your bad days while you are laying in bed. At this age they don't care that you didn't throw that ball, they just want to spend time with you. At least that is how my son is, but he's also been dealing with my condition since he was born. But he loves board games, it's OUR thing. Sometimes dh joins us, when he's not making dinner on those days , but usually it's just Bry and I. Kids love card games too, let them make up a new one. But you can lay on that heating pad with your feet propped up and still play on the bed.
The plaquenil for me is still kicking in and I've been on it for six months now. So if it were ME, I'd try to wait at least another 3 months if you can hang in there and really need your job. If you are only working cause you want to and not because you need the money, then I'd be the first to quit. But you have to remember to take care of YOU first, otherwise you won't be any good to anyone else. And the next time your dh gets the flu, tell HIM to suck it up cause you have it every darn day. This isn't really funny but true, my dh has literally had the flu 3 times in the last three months. He actually told me during the second bout that he was sorry if I had to feel that way everyday and know it wasn't going to get better. :-O Nothing like a good dose of reality to set them straight.
Anyway I hope this helps a little. You are not alone in this, we are here to listen and talk so if you need to vent, do it. If you need to celebrate a good day, do that too. We all get encouraged when one of us has a good one, cause that means maybe tomorrow will be our turn. {{HUG}}

need support

Hi, Angela, I just joined this group. I have had SLE for many years, am 48 now and do understand your pain and your frustration with trying to work, raise a family and be in pain and not sure if you can go on.
I am sorry that your husband is not being as supportive as he should be, but you are right, he just does not know how you feel. You just have to do what is best for you despite the fact that he says "suck it up"...you have an illness and you can't be there for your kids or for him if you collapse. Maybe you could find a job part time or do something from your home. There are many that do understand and somehow that helps I believe. Take care. Tammy

Tammy,
Thank you so much for your support. I am so glad you have joined our group. It has meant so much to me these past few weeks to be a part of something that understands what I am going through.

As far as my job goes, I have come to a realization that I have to make some lifestyle changes. For example, last week my husband was out of town, and by the time I got off of work my knees and lower legs hurt so bad I could barely walk. I still had to pick up my kids and take care of them for the evening. It really scared me just to drive home.

I look in the paper everyday for a part-time job or something I can do at home. I would love to work out of my home, but there is not alot of jobs for a nurse to do out of her home. If you have any suggestions even a change in careers, please share.

I hope your day is going good! God bless you and thanks for letting me unload again!!!!

reply to Angela

Thanks for welcoming me to your group. I am happy to be of help to anyone that I can be. That is why I joined. I have had this issue for so long that I feel that maybe I have some insight or at least can listen and understand to those that may be new at this problem. Keep looking for something other than what you are doing, something will come for you. Be patient with yourself and know that you are doing the very best that you can do. No one asks for these difficulties and sometimes we have to ask for a little help and understanding. We want our spouses and others to understand but sometimes pride gets in the way. We don't want to be seen as weak or sick or that we can't do like others can. However, this is our reality and to explain to others how we feel gives them an opportunity to love and care and reach out back to us. We are not weak, just have a condition that makes us hurt and be tired, etc.
Hang in there, Angela! Tammy